SELNET Project aim to improve sarcoma patients management and quality of care. Patients are the cornerstone of the project and they are represented within the Consortium through Sarcoma Patients EuroNet Association (SPAEN).
SPAEN aims to improve information services, patient support and advocacy to patient organizations for the benefit of sarcoma patients across the whole of Europe and internationally.
Piga Fernandez is a patient representative from SPAEN and she is also the president of Fundación GIST Chile. It is a non profit organization dedicated to support cancer patients in Chile; mainly with gastrointestinal cancers, but also patients with other types of cancer, who reach us seeking information and support.
SELNET has also established a collaboration with EURACAN, a patient-centered multi-domain ERN. ERN EURACAN covers all rare adult solid tumour cancers, grouping them into 10 domains corresponding to the RARECARE classification and ICD10. One of them is sarcoma. It is coordinated by the Centre Léon Bérard, one of SELNET partners, with the objective to improve the quality of care for all European citizens affected by rare cancers, while ensuring an optimized and homogeneous care and access to innovation, is provided throughout the EU member states.
Sarcomas are a diverse and relatively rare group of malignancies, accounting for slightly more than 1% of all cancer diagnoses in adults and for nearly 21% of all solid malignant cancers in children and young adults. Sarcomas can occur at any age and are not restricted to a specific location of the body. Sarcomas are often misdiagnosed, as they can arise anywhere in or on the body, frequently hidden deep in the limbs. Sometimes they are thought to be sports injuries and thus treated incorrectly. When eventually diagnosed, they may be large and difficult to remove surgically and they may have metastasized.
The rarity of the disease combined with the diverse number of subtypes can make sarcomas very difficult to treat correctly as well as to study. Therefore, please remember: Sarcomas need to be treated by specialists, in specialized centers!
SELNET Project try to increase the visibility of Sarcoma Advocacy Groups in each country to promote the communication and dissemination of information about sarcoma and SELNET Project.
For more information visit:
- Sarcoma Patients Euronet (SPAEN)
- ERN EURACAN
- Joint Action on Rare Cancers (JARC)
- Asociación Española de Afectados por Sarcoma (AEAS)
- Fundación Mari Paz Jiménez Casado
- Asociación Española Contra el Cáncer (AECC)
- Sarcoma UK
- Fundación “La sonrisa de Alex” (contra el sarcoma de Ewing)
- Asociación VyDA
- Colectivo GIST España
- Fundación GIST Mexico
- Fundación GIST Chile
- Trust Paola Gonzato-Rete Sarcoma Onlus
- https://gist.cl/El Club de la Mama Perú
- Asociación Mexicana de lucha contra el cáncer
- SOS Desmoide France
- Asociación Argentina de Neurofibromatosis (AANF)
- Alianza GIST
- A.I.G. Associazione Italiana GIST
- ISG Associazione di Volontariato Italy
- Federación Argentina de Enfermedades Poco Frecuentes (FADEPOF)
- Fundación para la Investigación, Docencia y Prevención del Cáncer (FUCA)
- ESPERANTRA – Asociación peruana de pacientes con enfermedades crónicas y usuarios de servicios de salud
- Asociación Todos Unidos Enfermedades Raras Uruguay (ATUERU)
- La Fundación Unión Europea-América Latina y el Caribe (Fundación EU-LAC)
- Chordoma Foundation